Come over to ask some questions (FTT and eating issues)

[kimandhuck]

Hi! I wanted to see if anyone is having the same issues with their LO that we're having with DS, or maybe if anyone has any advice/ suggestions. This got real long real fast, so sorry!

DS was 7lb2oz at birth, and stayed kind of chunky until about 18 months or so (breastfed until 8 months, then refused to nurse, but drank from bottles like a champ, so he started formula then). That's when his pedi noticed that his percentiles were dropping. I thought it was just because he was walking off the baby fat, but she seemed concerned and had him go back in at 20 months for a weight check, where his percentiles were still dropping. Of course he was on table foods at that point, and ate normal, so I thought that maybe he was just going to be small. (I'm 5'4 and DH is 5'10, and there's lots of short people in our families.)

Fast forward to 2.5 and he completely stops eating and only wants to drink pediasure. He complains about his stomach hurting constantly. He then weighs 23 lbs. The pedi told us we're giving him too much pediasure and that's making him full to where he doesn't want to eat, so we cut back to 1/day per his request. He doesn't seemed concerned at all, but I make him get labwork done. It took 5 different people (8 tries) for them to get blood from my poor baby. All bloodwork and stool and urine samples come back normal. TSH, T4, and sugar levels are normal, Celiac was negative, etc. 

DH's parents suggest we see an endo to check growth hormone levels. Pedi refuses to make a referral because he sees no concern, so we switch pedi's (that was the straw that broke the camel's back, there were other issues, too). New pedi gives us a referral to a endo and a pedi GI. Endo runs tests and growth factors are normal.

We've now had our appt with the GI and are waiting on insurance to approve his meds, and will be having an endoscopy at the end of April and possibly a colonoscopy.

Has anyone ever dealt with anything like this with themself or their LO? This is so stressful and I'm at a loss about what to do. We're giving him 3 pediasures /day now and he got up to 26lbs, but dropped back down to 25 and has been holding steady. He'll be 3 in May and is just now in 18 month clothes, only for length, they still fall off of him.

[mrsbuttinski]

No advice, but welcome to the board.

Has he been evaluated by a feeding clinic that has both an SLP and OT?

[KC thepouchh8r]

Welcome!!! My dd was previously underweight but never to the extreme you described. I hope the GI brings some answers.

[toastie]

Welcome! My oldest was 8.14 at birth and it took him almost a year to double his weight. He had severe reflux that caused him a significant food aversion.

Has your GI ordered an upper GI and a swallow study? To check for reflux or other mechanical reasons he doesn't want to eat?

You said he stopped eating and complained of stomach pain, did the stomach pain come first? Is it possible he has a food intolerance which could cause significant stomach or GI pain but wouldn't show up on bloodwork?

We had my oldest on pediasure from 1-4 to gain weight. We only did a bottle a day and we watered it down. Although we just added milk. Have you tried watering it down? I found it made it easier to digest and didn't fill him up as much.

I'm sure you've tried everything but I'll tell you our method. We started back at purees. We did basic things like applesauce and other sweet things that were easy to digest. You can add scoops of pediasure to it if you want to increase calories or duocal works too. We did gluten free oatmeal with a baby fruit purée added for flavor, scrambled eggs made without milk or cheese since dairy is a common intolerance. And started there. He was younger so there was lots of bribing, distraction, etc. my kid still eats better in front of the tv or iPad. At 4 we cut out the pediasure and his appetite picked up. By that time though his diet was mostly food, so cutting out the pediasure was cutting out a supplement, not his whole diet.

[kimandhuck]

Mar 17, 2015 18:37:06 GMT -5 mrsbuttinski said:

No advice, but welcome to the board.

Has he been evaluated by a feeding clinic that has both an SLP and OT?

No, he has not. I actually didn't even know those existed. How do I go about getting an appointment?

[kimandhuck]

Mar 18, 2015 7:26:32 GMT -5 toastie said:

Welcome! My oldest was 8.14 at birth and it took him almost a year to double his weight. He had severe reflux that caused him a significant food aversion.

Has your GI ordered an upper GI and a swallow study? To check for reflux or other mechanical reasons he doesn't want to eat?

You said he stopped eating and complained of stomach pain, did the stomach pain come first? Is it possible he has a food intolerance which could cause significant stomach or GI pain but wouldn't show up on bloodwork?

We had my oldest on pediasure from 1-4 to gain weight. We only did a bottle a day and we watered it down. Although we just added milk. Have you tried watering it down? I found it made it easier to digest and didn't fill him up as much.

I'm sure you've tried everything but I'll tell you our method. We started back at purees. We did basic things like applesauce and other sweet things that were easy to digest. You can add scoops of pediasure to it if you want to increase calories or duocal works too. We did gluten free oatmeal with a baby fruit purée added for flavor, scrambled eggs made without milk or cheese since dairy is a common intolerance. And started there. He was younger so there was lots of bribing, distraction, etc. my kid still eats better in front of the tv or iPad. At 4 we cut out the pediasure and his appetite picked up. By that time though his diet was mostly food, so cutting out the pediasure was cutting out a supplement, not his whole diet.

She has not ordered either of those tests. DS didn't have reflux as a baby, so this was all so sudden and new to us.

The stomach pain was before he stopped eating. I'm thinking he has EoE, which is an intolerance to something that is making his esophagus swell. He doesn't have an issue drinking the pediasures. He asks for them constantly. We've tried giving applesauce and baby foods since they'd be easier to swallow and sometimes he'll eat them then other times he won't.

[mrsbuttinski]

Mar 18, 2015 8:18:54 GMT -5 kimandhuck said:

Mar 17, 2015 18:37:06 GMT -5 mrsbuttinski said:

No advice, but welcome to the board.

Has he been evaluated by a feeding clinic that has both an SLP and OT?

No, he has not. I actually didn't even know those existed. How do I go about getting an appointment?

You typically only find these at major pediatric hospitals. Your specialists could refer you.

EoE could make sense given the timeline. My cousin's son has it as well as some major food allergies. He's seen by a team including a psychologist who works with disordered eating related to various conditions.

[Life is interesting]

Mar 17, 2015 15:25:45 GMT -5 kimandhuck said:

Hi! I wanted to see if anyone is having the same issues with their LO that we're having with DS, or maybe if anyone has any advice/ suggestions. This got real long real fast, so sorry!

DS was 7lb2oz at birth, and stayed kind of chunky until about 18 months or so (breastfed until 8 months, then refused to nurse, but drank from bottles like a champ, so he started formula then). That's when his pedi noticed that his percentiles were dropping. I thought it was just because he was walking off the baby fat, but she seemed concerned and had him go back in at 20 months for a weight check, where his percentiles were still dropping. Of course he was on table foods at that point, and ate normal, so I thought that maybe he was just going to be small. (I'm 5'4 and DH is 5'10, and there's lots of short people in our families.)

Fast forward to 2.5 and he completely stops eating and only wants to drink pediasure. He complains about his stomach hurting constantly. He then weighs 23 lbs. The pedi told us we're giving him too much pediasure and that's making him full to where he doesn't want to eat, so we cut back to 1/day per his request. He doesn't seemed concerned at all, but I make him get labwork done. It took 5 different people (8 tries) for them to get blood from my poor baby. All bloodwork and stool and urine samples come back normal. TSH, T4, and sugar levels are normal, Celiac was negative, etc. 

DH's parents suggest we see an endo to check growth hormone levels. Pedi refuses to make a referral because he sees no concern, so we switch pedi's (that was the straw that broke the camel's back, there were other issues, too). New pedi gives us a referral to a endo and a pedi GI. Endo runs tests and growth factors are normal.

We've now had our appt with the GI and are waiting on insurance to approve his meds, and will be having an endoscopy at the end of April and possibly a colonoscopy.

Has anyone ever dealt with anything like this with themself or their LO? This is so stressful and I'm at a loss about what to do. We're giving him 3 pediasures /day now and he got up to 26lbs, but dropped back down to 25 and has been holding steady. He'll be 3 in May and is just now in 18 month clothes, only for length, they still fall off of him.

What meds did gi order?

Honestly the GI should have ordered a feeding eval which consists if a speech and occupational therapist. Then again if he is thinking ee only a endoscopy and biopsy can dx that and I wasn't there soni don't know what his thought process was.

You also need a pediatric dietitian to look at his caloric needs. The gi can refer you and should work with one.

I can imagine it is stressful but you are being seen now and hopefully some answers one way or the other after the scope.
[. Overall try to relax and don't make mealtime stressful. Have him sit at the table with you for meals whether he eats or not. Offer meals and snacks at structured planned times rather than at will.

Ps endo isn't really an appropriate referral, GI is IMO.

[kimandhuck]

Mar 18, 2015 8:47:06 GMT -5 mrsbuttinski said:

Mar 18, 2015 8:18:54 GMT -5 kimandhuck said:

No, he has not. I actually didn't even know those existed. How do I go about getting an appointment?

You typically only find these at major pediatric hospitals. Your specialists could refer you.

EoE could make sense given the timeline. My cousin's son has it as well as some major food allergies. He's seen by a team including a psychologist who works with disordered eating related to various conditions.

The GI is at Children's, so she should be able to find me someone, right?

The allergy tests they did (bloodwork, not a poke test) only showed a small reaction to nectarines. But, of course, that wouldn't show an intolerance. 

[kimandhuck]

Mar 18, 2015 10:19:04 GMT -5 Life is interesting said:

Mar 17, 2015 15:25:45 GMT -5 kimandhuck said:

Hi! I wanted to see if anyone is having the same issues with their LO that we're having with DS, or maybe if anyone has any advice/ suggestions. This got real long real fast, so sorry!

DS was 7lb2oz at birth, and stayed kind of chunky until about 18 months or so (breastfed until 8 months, then refused to nurse, but drank from bottles like a champ, so he started formula then). That's when his pedi noticed that his percentiles were dropping. I thought it was just because he was walking off the baby fat, but she seemed concerned and had him go back in at 20 months for a weight check, where his percentiles were still dropping. Of course he was on table foods at that point, and ate normal, so I thought that maybe he was just going to be small. (I'm 5'4 and DH is 5'10, and there's lots of short people in our families.)

Fast forward to 2.5 and he completely stops eating and only wants to drink pediasure. He complains about his stomach hurting constantly. He then weighs 23 lbs. The pedi told us we're giving him too much pediasure and that's making him full to where he doesn't want to eat, so we cut back to 1/day per his request. He doesn't seemed concerned at all, but I make him get labwork done. It took 5 different people (8 tries) for them to get blood from my poor baby. All bloodwork and stool and urine samples come back normal. TSH, T4, and sugar levels are normal, Celiac was negative, etc. 

DH's parents suggest we see an endo to check growth hormone levels. Pedi refuses to make a referral because he sees no concern, so we switch pedi's (that was the straw that broke the camel's back, there were other issues, too). New pedi gives us a referral to a endo and a pedi GI. Endo runs tests and growth factors are normal.

We've now had our appt with the GI and are waiting on insurance to approve his meds, and will be having an endoscopy at the end of April and possibly a colonoscopy.

Has anyone ever dealt with anything like this with themself or their LO? This is so stressful and I'm at a loss about what to do. We're giving him 3 pediasures /day now and he got up to 26lbs, but dropped back down to 25 and has been holding steady. He'll be 3 in May and is just now in 18 month clothes, only for length, they still fall off of him.

What meds did gi order?

Honestly the GI should have ordered a feeding eval which consists if a speech and occupational therapist. Then again if he is thinking ee only a endoscopy and biopsy can dx that and I wasn't there soni don't know what his thought process was.

You also need a pediatric dietitian to look at his caloric needs. The gi can refer you and should work with one.

I can imagine it is stressful but you are being seen now and hopefully some answers one way or the other after the scope.
[. Overall try to relax and don't make mealtime stressful. Have him sit at the table with you for meals whether he eats or not. Offer meals and snacks at structured planned times rather than at will.

Ps endo isn't really an appropriate referral, GI is IMO.

Omeprazole. We just started it last night. We're having to mix it in with applesauce since it's a capsule.

What does the speech therapist help with? He just finished ST last week after being in for a year.

The GI had a nutritionist call me and we went over the food journal I've been keeping and told me what I should add in to his diet. She didn't give me a specific calorie intake amount, though.

We do make him stay at the table while we eat, even if he doesn't eat. We'll offer applesauce and baby food after he rejects table food. And he knows he doesn't get his pediasure until after everyone is done.

I completely agree with the endo part, that was all my ILs. They wanted him seen by an endo, so DH made that appt. I told him it's pointless (which is was, and I'm glad he sees that now) and that he only needs a GI, so I made sure to get that appt.

[cam]

Welcome. No experience with everything you are dealing with, but we have had some challenging food allergies to figure out, so if I can be of any help in that area, let me know.

[toastie]

omeprazole is Prilosec. It's an antacid. Never worked for us, I would be more inclined to try placid which is PPI, works differently.

Is the GI thinking he has an ulcer? That's another reason Prilosec is used. And EE and Celiac are really only diagnosable through invasive procedures. Most often celiac blood work will come back negative, same with other allergen and intolerances.

If you cut out the pediasure what happens when he gets hungry? Will he eat the squeeze pouches of baby food?

[kimandhuck]

Mar 18, 2015 12:44:39 GMT -5 toastie said:

omeprazole is Prilosec. It's an antacid. Never worked for us, I would be more inclined to try placid which is PPI, works differently.

Is the GI thinking he has an ulcer? That's another reason Prilosec is used. And EE and Celiac are really only diagnosable through invasive procedures. Most often celiac blood work will come back negative, same with other allergen and intolerances.

If you cut out the pediasure what happens when he gets hungry? Will he eat the squeeze pouches of baby food?

She hasn't mentioned an ulcer, though it is possible since my dad and I both get them.

He just straight up wouldn't eat if we cut out the pediasures. He might eat more baby food. Now you have me wondering if I should try that and see what happens, but I don't want him to starve, ya know?

[dixienormous]

Call Early Intervention and discuss the feeding issues. We had a feeding eval with our speech eval when PF was first diagnosed and we were going through the process.

That being said, even with feeding therapy, my daughter (PF) got a G-tube at 2 years old because she was FTT and only 19lbs at her 2 year well check. She still gets feeding therapy and is making progress albeit slow. She's primarily tube fed. She's 4 and 31lbs now. She had a 7lb weight gain last year thanks to the gtube.

Her situation is different though. She has low tone throughout her body including oral motor and wasn't able to consume enough calories.

[mcribster]

How are his poops?
I would get evaluated by an OT to to cover your bases- are there any sensory issues? FWIW pulling my kids go to food (gluten/dairy) opened up their eating after about 3-4 days in. If a child just wants milk that's a clue to pull milk for a week to see- I know it's hard because that's all he's having but it may help. Intolerances are trial and error and the blood tests are not great so I'd watch for reactions after taking things out and reintroducing them. A good probiotic might also help in the face of any autoimmune condition. GL!

[toastie]

Mar 18, 2015 13:41:38 GMT -5 kimandhuck said:

Mar 18, 2015 12:44:39 GMT -5 toastie said:

omeprazole is Prilosec. It's an antacid. Never worked for us, I would be more inclined to try placid which is PPI, works differently.

Is the GI thinking he has an ulcer? That's another reason Prilosec is used. And EE and Celiac are really only diagnosable through invasive procedures. Most often celiac blood work will come back negative, same with other allergen and intolerances.

If you cut out the pediasure what happens when he gets hungry? Will he eat the squeeze pouches of baby food?

She hasn't mentioned an ulcer, though it is possible since my dad and I both get them.

He just straight up wouldn't eat if we cut out the pediasures. He might eat more baby food. Now you have me wondering if I should try that and see what happens, but I don't want him to starve, ya know?

Oh I totally understand.  I always hate when people just say, he'll eat when he's hungry or drink when he's thirsty.  

How ow is his receptive language?  What about having to earn the pediasure? Such as take one bite and then a sip of pediasure? or something of that nature.  Will he try eating if you let him prepare the food like Celery with peanut butter or other high protein snacks? I'm just throwing out ideas, I know how frustrating it is.

and fwiw my ds1 is just small.  He was born at 8lb 14oz at 39w.  At 4 he is barely 30 lbs. and he eats like a maniac now.

[Life is interesting]

Mar 18, 2015 12:44:39 GMT -5 toastie said:

omeprazole is Prilosec. It's an antacid. Never worked for us, I would be more inclined to try placid which is PPI, works differently.

Is the GI thinking he has an ulcer? That's another reason Prilosec is used. And EE and Celiac are really only diagnosable through invasive procedures. Most often celiac blood work will come back negative, same with other allergen and intolerances.

If you cut out the pediasure what happens when he gets hungry? Will he eat the squeeze pouches of baby food?

Prilosec is also a ppi. Not my first choice in young children but it does work. Every clinician has their favorites. I would absolutely agree with putting her on a ppi and if she has ee this will be a mainstay of treatment.[it reduces the acid production and in gerd or reflux can help pain,
]
Is your endoscopy soon?

I'm surprised he didn't advicate for an allergen free formula. At this age they are prescription only and very expensive but a trial might be a good thing. ( when I say expensive I mean that we had some insurance coverage for this 3 years ago and it was still $500 a month). In my case we didn't see much benefit.

Also glad you spoke with a dietitian. Likely she calculated calories and advised you based on that.

Ps great table eating habits too!

Ps I quoted the wrong person but hopefully you'll see this.

Oh one more you see a feeding team which consists of OT and ST together to assess any feeding difficulties such as chewing swallowing and in between. A feeding team would be at a larger medical institution or chikdrens hospital. Tricky with insurance e coverage sometimes but also indicated.

[kimandhuck]

Mar 18, 2015 13:54:19 GMT -5 mcribster said:

How are his poops?
I would get evaluated by an OT to to cover your bases- are there any sensory issues? FWIW pulling my kids go to food (gluten/dairy) opened up their eating after about 3-4 days in. If a child just wants milk that's a clue to pull milk for a week to see- I know it's hard because that's all he's having but it may help. Intolerances are trial and error and the blood tests are not great so I'd watch for reactions after taking things out and reintroducing them. A good probiotic might also help in the face of any autoimmune condition. GL!

Wait, are you McRib on LoM? If so, I've talked to you about this before. I didn't even think about you being on the SNs board over here.

His poops were really watery, so we cut out juice and fruit and they're normal again, for the most part. He doesn't drink any milk at home. He'll have some tea when it's meal time (since I don't want to give pediasure until after a meal so that maybe he'll eat). He has a cup of milk twice at daycare (breakfast and lunch), and water at snack time.

I don't know if you remember, but he goes through phases where he'll randomly break out in hives after eating. It'll last about a week, then stop for a month, then start up again.

[kimandhuck]

Mar 18, 2015 15:13:14 GMT -5 toastie said:

Mar 18, 2015 13:41:38 GMT -5 kimandhuck said:

She hasn't mentioned an ulcer, though it is possible since my dad and I both get them.

He just straight up wouldn't eat if we cut out the pediasures. He might eat more baby food. Now you have me wondering if I should try that and see what happens, but I don't want him to starve, ya know?

Oh I totally understand.  I always hate when people just say, he'll eat when he's hungry or drink when he's thirsty.  

How ow is his receptive language?  What about having to earn the pediasure? Such as take one bite and then a sip of pediasure? or something of that nature.  Will he try eating if you let him prepare the food like Celery with peanut butter or other high protein snacks? I'm just throwing out ideas, I know how frustrating it is.

and fwiw my ds1 is just small.  He was born at 8lb 14oz at 39w.  At 4 he is barely 30 lbs. and he eats like a maniac now.

OMG, that is my mom. She's always like "He'll eat when he gets hungry." No, dude. Not if it hurts him to eat!

His receptive language is fine. He was in ST for his expressive language. We try the "earning" a pediasure by doing what you said, take a bite of this and you can have your "growing milk" (that's what he calls it). 

[kimandhuck]

Mar 18, 2015 15:33:08 GMT -5 allwaswell said:

My boys both have feeding issues, but not nearly what you're describing. They both see an OT for sensory issues as well as SLPs for feeding therapy. Getting a feeding eval is probably a good idea regardless of what is going on. But FWIW I have food intolerances and man did it hurt when I ate things I couldn't tolerate. I couldn't figure out what was wrong with me and had a bunch of tests run. My intolerances showed up on the skin prick test...most were not even that high on the scale (2/4 and one was 3/4 I think), but I was eating them in combination and everyday.

I need to get him in with an allergist. The one that his former pedi sent him to laughed in my face and said kids under 5 don't have allergies.

He was a major jackass, but it's scared me to go to another one. I need to ask my mom who I went to as a kid, and see if they're still around.

[kimandhuck]

Mar 19, 2015 1:14:03 GMT -5 Life is interesting said:

Mar 18, 2015 12:44:39 GMT -5 toastie said:

omeprazole is Prilosec. It's an antacid. Never worked for us, I would be more inclined to try placid which is PPI, works differently.

Is the GI thinking he has an ulcer? That's another reason Prilosec is used. And EE and Celiac are really only diagnosable through invasive procedures. Most often celiac blood work will come back negative, same with other allergen and intolerances.

If you cut out the pediasure what happens when he gets hungry? Will he eat the squeeze pouches of baby food?

Prilosec is also a ppi. Not my first choice in young children but it does work. Every clinician has their favorites. I would absolutely agree with putting her on a ppi and if she has ee this will be a mainstay of treatment.[it reduces the acid production and in gerd or reflux can help pain,
]
Is your endoscopy soon?

I'm surprised he didn't advicate for an allergen free formula. At this age they are prescription only and very expensive but a trial might be a good thing. ( when I say expensive I mean that we had some insurance coverage for this 3 years ago and it was still $500 a month). In my case we didn't see much benefit.

Also glad you spoke with a dietitian. Likely she calculated calories and advised you based on that.

Ps great table eating habits too!

Ps I quoted the wrong person but hopefully you'll see this.

Oh one more you see a feeding team which consists of OT and ST together to assess any feeding difficulties such as chewing swallowing and in between. A feeding team would be at a larger medical institution or chikdrens hospital. Tricky with insurance e coverage sometimes but also indicated.

The endoscopy is at the end of April.

[mcribster]

Mar 19, 2015 7:34:57 GMT -5 kimandhuck said:

Mar 18, 2015 13:54:19 GMT -5 mcribster said:

How are his poops?
I would get evaluated by an OT to to cover your bases- are there any sensory issues? FWIW pulling my kids go to food (gluten/dairy) opened up their eating after about 3-4 days in. If a child just wants milk that's a clue to pull milk for a week to see- I know it's hard because that's all he's having but it may help. Intolerances are trial and error and the blood tests are not great so I'd watch for reactions after taking things out and reintroducing them. A good probiotic might also help in the face of any autoimmune condition. GL!

Wait, are you McRib on LoM? If so, I've talked to you about this before. I didn't even think about you being on the SNs board over here.

His poops were really watery, so we cut out juice and fruit and they're normal again, for the most part. He doesn't drink any milk at home. He'll have some tea when it's meal time (since I don't want to give pediasure until after a meal so that maybe he'll eat). He has a cup of milk twice at daycare (breakfast and lunch), and water at snack time.

I don't know if you remember, but he goes through phases where he'll randomly break out in hives after eating. It'll last about a week, then stop for a month, then start up again.

yeah. i get around ;0
a traditional allergist won't get you anywhere unless he has IgE allergies (big ones). The sensitivities can be done through IgG blood test (not FDA approved so you need a naturopath or an allergist that thinks out of the box which I think may be near impossible given your location) or even better by elimination. I would trial eliminating the big ones (gluten,dairy, corn, soy). Given the background you have with ticks I would consider that as a possibility and also mold in your house. Mold and/or Lyme can create a reactive high histamine kid because the immune system is going haywire. A probiotic can help limit this reactions somewhat as can eliminating each layer impacting the immune system. We do a paleo type diet for my kids who have somewhat similar issues (DD is worse than DS) and it's been successful for them. I would def get him evaluated as others have suggested and get into a GI as soon as you can.

[Life is interesting]

Mar 19, 2015 8:17:34 GMT -5 mcribster said:

Mar 19, 2015 7:34:57 GMT -5 kimandhuck said:

Wait, are you McRib on LoM? If so, I've talked to you about this before. I didn't even think about you being on the SNs board over here.

His poops were really watery, so we cut out juice and fruit and they're normal again, for the most part. He doesn't drink any milk at home. He'll have some tea when it's meal time (since I don't want to give pediasure until after a meal so that maybe he'll eat). He has a cup of milk twice at daycare (breakfast and lunch), and water at snack time.

I don't know if you remember, but he goes through phases where he'll randomly break out in hives after eating. It'll last about a week, then stop for a month, then start up again.

yeah. i get around ;0
a traditional allergist won't get you anywhere unless he has IgE allergies (big ones). The sensitivities can be done through IgG blood test (not FDA approved so you need a naturopath or an allergist that thinks out of the box which I think may be near impossible given your location) or even better by elimination. I would trial eliminating the big ones (gluten,dairy, corn, soy). Given the background you have with ticks I would consider that as a possibility and also mold in your house. Mold and/or Lyme can create a reactive high histamine kid because the immune system is going haywire. A probiotic can help limit this reactions somewhat as can eliminating each layer impacting the immune system. We do a paleo type diet for my kids who have somewhat similar issues (DD is worse than DS) and it's been successful for them. I would def get him evaluated as others have suggested and get into a GI as soon as you can.

I am in GI and I run allergy tests, IGG and IGE and A on a case by case basis.. So a typical provider does do these things

the hives and allergies along with the eating concerns point to possible EE but you won't know until after the scope. Find a better allergist at a major medical center.

You have had the run around OP good for you for persisting!

Ps don't start elimination diets until after she is scoped. The stomach needs to show reaction to these things and the inflammation and damage may stop with a strict elimination diet before.

[kimandhuck]

Mar 19, 2015 8:17:34 GMT -5 mcribster said:

Mar 19, 2015 7:34:57 GMT -5 kimandhuck said:

Wait, are you McRib on LoM? If so, I've talked to you about this before. I didn't even think about you being on the SNs board over here.

His poops were really watery, so we cut out juice and fruit and they're normal again, for the most part. He doesn't drink any milk at home. He'll have some tea when it's meal time (since I don't want to give pediasure until after a meal so that maybe he'll eat). He has a cup of milk twice at daycare (breakfast and lunch), and water at snack time.

I don't know if you remember, but he goes through phases where he'll randomly break out in hives after eating. It'll last about a week, then stop for a month, then start up again.

yeah. i get around ;0
a traditional allergist won't get you anywhere unless he has IgE allergies (big ones). The sensitivities can be done through IgG blood test (not FDA approved so you need a naturopath or an allergist that thinks out of the box which I think may be near impossible given your location) or even better by elimination. I would trial eliminating the big ones (gluten,dairy, corn, soy). Given the background you have with ticks I would consider that as a possibility and also mold in your house. Mold and/or Lyme can create a reactive high histamine kid because the immune system is going haywire. A probiotic can help limit this reactions somewhat as can eliminating each layer impacting the immune system. We do a paleo type diet for my kids who have somewhat similar issues (DD is worse than DS) and it's been successful for them. I would def get him evaluated as others have suggested and get into a GI as soon as you can.

I think I somehow skipped over your post about the ticks on LoM (sorry!), but all of this started well before last summer when he was bite by a tick.

[kimandhuck]

Mar 19, 2015 8:57:08 GMT -5 Life is interesting said:

Mar 19, 2015 8:17:34 GMT -5 mcribster said:

yeah. i get around ;0
a traditional allergist won't get you anywhere unless he has IgE allergies (big ones). The sensitivities can be done through IgG blood test (not FDA approved so you need a naturopath or an allergist that thinks out of the box which I think may be near impossible given your location) or even better by elimination. I would trial eliminating the big ones (gluten,dairy, corn, soy). Given the background you have with ticks I would consider that as a possibility and also mold in your house. Mold and/or Lyme can create a reactive high histamine kid because the immune system is going haywire. A probiotic can help limit this reactions somewhat as can eliminating each layer impacting the immune system. We do a paleo type diet for my kids who have somewhat similar issues (DD is worse than DS) and it's been successful for them. I would def get him evaluated as others have suggested and get into a GI as soon as you can.

I am in GI and I run allergy tests, IGG and IGE and A on a case by case basis.. So a typical provider does do these things

the hives and allergies along with the eating concerns point to possible EE but you won't know until after the scope. Find a better allergist at a major medical center.

You have had the run around OP good for you for persisting!

Ps don't start elimination diets until after she is scoped. The stomach needs to show reaction to these things and the inflammation and damage may stop with a strict elimination diet before.

Yes, it has been a whirlwind, for sure, but I'm determined to find out what is wrong with my baby.

[cam]

Mar 19, 2015 7:38:47 GMT -5 kimandhuck said:

Mar 18, 2015 15:33:08 GMT -5 allwaswell said:

My boys both have feeding issues, but not nearly what you're describing. They both see an OT for sensory issues as well as SLPs for feeding therapy. Getting a feeding eval is probably a good idea regardless of what is going on. But FWIW I have food intolerances and man did it hurt when I ate things I couldn't tolerate. I couldn't figure out what was wrong with me and had a bunch of tests run. My intolerances showed up on the skin prick test...most were not even that high on the scale (2/4 and one was 3/4 I think), but I was eating them in combination and everyday.

I need to get him in with an allergist. The one that his former pedi sent him to laughed in my face and said kids under 5 don't have allergies.

He was a major jackass, but it's scared me to go to another one. I need to ask my mom who I went to as a kid, and see if they're still around.

Wow. I never cease to be amazed at what some medical professionals believe (this is by no means against medical professionals as a whole because many are amazing, but I have had some moments of being dumbfounded). I guess my 3yo's severe allergic reactions, countless rashes, irritability, etc are all in our heads.

I absolutely know how frustrating it is in general also to have to fight and fight for answers and feel like you are getting nowhere. I have had an issue for 15 years that I am just finally feeling like we are making headway towards answers on. I hope you are able to get answers soon.

[kimandhuck]

Mar 19, 2015 9:43:01 GMT -5 cam said:

Mar 19, 2015 7:38:47 GMT -5 kimandhuck said:

I need to get him in with an allergist. The one that his former pedi sent him to laughed in my face and said kids under 5 don't have allergies.

He was a major jackass, but it's scared me to go to another one. I need to ask my mom who I went to as a kid, and see if they're still around.

Wow. I never cease to be amazed at what some medical professionals believe (this is by no means against medical professionals as a whole because many are amazing, but I have had some moments of being dumbfounded). I guess my 3yo's severe allergic reactions, countless rashes, irritability, etc are all in our heads.

I absolutely know how frustrating it is in general also to have to fight and fight for answers and feel like you are getting nowhere. I have had an issue for 15 years that I am just finally feeling like we are making headway towards answers on. I hope you are able to get answers soon.

Oh, yes, you completely made that up. Just like my mom made up my not being able to breath after eating egg yolks...

Like I said, he was a jackass.

[numbbears]

Welcome! DS has some problems with textures and only wants to drink milk some days (but only every once in a while). Hope you get some answers soon.